Living with Chronic Illness

Dear Blooms,

Thank you for once again reading my work. I don’t normally start blog posts off like this as I’m aware some people don’t read my work for me, but the topic of conversation. However, I want to say how grateful I am to put something out there into the world which has allowed me to heal and further understand aspects of my mental and physical wellbeing which I had paid little attention to prior to expressing them on paper.

Recently I have taken an extended break from the Bud to Bloom blog because I’ve had a considerable amount going on BTS which has been considerably tough to deal with. Therefore expressing the situation on paper may also have a beneficial effect. Not just for me, but anyone out there who suffers from a chronic health condition.

So without further ado, let’s begin.

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If this is the first blog post of mine that you’ve read, hi I’m Loren – but my nickname’s Lori which is what I most commonly go by especially on Instagram. For many years I have suffered from a chronic physical health condition which causes widespread pain, tissue damage, gastrointestinal complications, poor post-op healing, and not being able to walk due to hip dysplasia, scoliosis, and joint instability. If any of my IG followers who’ve seen me talk about the condition Ehlers Danlos syndrome, this may be ringing a bell. Yet for those who have EDS, the alarms will be blaring.

I’ve always experienced symptoms, however – the severity increased and new symptoms appeared, increasing in succession. The aches and pains I had in early childhood were put down to accidents, bullying, and growing pains. Therefore I thought this was normal as I’d always had them. Yet it wasn’t until age 13 that I realised something was wrong.

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During secondary school, my back pain was becoming an issue, and in year 9 it really kicked off; it was PIIIIIIIIIISSED. Due to the reception and support (or lack thereof), we received from the school I relied upon home tuition services supplied by the district. Throughout this period of time, I was under investigation with a rheumatologist to detect the cause of my unexplained and persistent pain, which by then had made its way into my neck, hips and knees. Yet the quality of care they provided was abysmal, and like many with an uncommon chronic illness, it was written off and dismissed for a while before they gave me the diagnosis of fibromyalgia – whilst also acknowledging I had hypermobile joints and CFS.

At the time we too were under the impression that I had fibromyalgia as it’s a condition diagnosed using a process of elimination – yet there were elements of my body that weren’t considered which indicate that this is not in fact fibromyalgia. This is something else, and it’s only now – nearly 6 years later – that I was acknowledged as being highly likely to have HEDS (hypermobile EDS). But it’s important to note they’re still investigating other conditions which I could have instead – yet it’s unlikely.

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Currently, I am without a definitive diagnosis due to further testing to assess my heart health and the severity of my POTS. This past few months have been bloody rough, as I have had appointments after appointments; which don’t get me wrong I am very grateful for! Yet when you have a chronic condition it feels like you’re living from one appointment to the next as the preparation, travel, and engagement involved is draining and can leave you feeling exhausted and unable to carry out chores or activities that you’re wanting to crack on with.

Now, society is ableist in the way it projects expectations of the ideal lifestyle and success upon us; which hold unrealistic expectations for the majority. However, it’s impossible for those with chronic health conditions to adhere to the expectations they’ve been conditioned to conform to and judge themselves with. We’re made to believe that we should always be aiming for the next big thing, we want success, and lack of constant productivity is classified as laziness which is considered undesirable and indicative of your character. If you take time for yourself you’re selfish, if you aren’t able to proceed with higher education you’re a failure and won’t be as successful as a result; you’ve blown your chance. If you’re happy with a 9-5 office job you would be even happier if you went for a promotion. All of the contradictory ideals we’re surrounded with throughout our childhood cause us to form unrealistic goals and achievements in our minds, yet we’re never informed of the impact a health condition can have on what we should expect if ourselves. We aren’t told that you’re the priority in your own life and that ensuring you are looking after yourself entirely is the most important thing. No job, degree, or grade will ever match to dedicating your time to doing everything you can to heal and support your wellbeing. So when we suffer in this way we feel lazy, that we’re procrastinating, we’ve lost motivation, you’re disappointing people, you’ve let yourself down etc. 

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I am currently experiencing the tail-end of an emotional tornado regarding my health, inability to do basic things, lack of independence in certain areas, issues in my personal life, and having to defer my place at university due to the necessary rehabilitation and rest I require to try and restore my condition to a stable and safe place. Admittedly I have felt like I was being lazy, slacking, making excuses for not being able to study or write because I’ve lost interest and my brain just needs to be kicked into gear. Yet even I knew that I was using maladaptive coping mechanisms to try and adjust and understand the complexity of the emotions I was experiencing; which was bloody ridiculous as mentally bullying myself on the daily is hardly going to make me feel less depressed is it?

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Although I know I’m not the only person with a chronic illness who’s been caught in this trap. I know I’m not the only one who’s had to battle to feel recognised and understood with medical professionals or the education system. I know I’m not the only one to, at times, feel like they’re alone with what they’re dealing with because of how isolating and dehumanising it can feel. This is why I’ve made this blog post…because just knowing that someone has gone through similar things to you and has felt the same way, as a result, can bring a sense of comfort and relief.

So whatever you’re going through, I strongly suggest seeking advice or support from someone you trust will listen and respect your feelings, and that if things start affecting you emotionally to reach out to a mental health professional (whether that’s through hotlines, emailing support organisations, or being referred via your GP). Below I have attached links and brief descriptions of a few helpful sites which could come in handy for yourself or someone you know, and don’t forget that there are little pockets of individuals online who actively try and support those experiencing a certain illness or disorder (e.g. EDS support group).

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Sending love and my positive energy,

Lori x

Mind UK

Phone: 0300 303 5999 

Email: bluelightinfo@mind.org.uk

Text: 84999

“We provide advice and support to empower anyone experiencing a mental health problem. We campaign to improve services, raise awareness and promote understanding.”

NHS – social care and support 

Information on the forms of social care services available and the help they can provide you, your carer, or a loved one. Such as carer support, equipment and residential housing, information on caring for others, and the financial support.

NHS – find services near you

 

Mental health toolbox for EDS/HSD

Resources and information regarding ways to support your mental health alongside your condition

Ehlers Danlos Society newsletter

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